Donate and support Sam’s 78 miles Thames Path Walk (in costume!)

If you’ve been following us on Social Media, you know that today – TODAY (!!!!!) Sam is starting the Thames Path Walk. He’s walking 78 miles across three days (a marathon a day) to raise awareness and funds for NKH Research.

We’re really lucky with this one – this isn’t one of our events, it was put on by Bazaarvoice – Sam’s Work. BV (already having a soft spot with us as Kai is one of three London BV babies) has been an incredible support for our little family this past year, I can’t even begin to share how many times Sam has had to work from hospice or hospital and it’s been no problem. How many BVers have come to our fundraising events (High five to wine and pasta, right?!) and how many send messages of support and love and how many have donated each time we’ve asked.

It’s been phenomenal.

On top of all of this, they put on the Thames Walk. When Sam told me about it I laughed – I loved the idea of him walking a crazy way to raise funds (usually it is me suggesting the crazy adventure, so it was nice that this time he was doing it). Not only did they make giant posters of Kai to convince others to join them on the walk (and many people ARE joining them) (also, I wasn’t kidding about the massive posters – they’re A0. They’re GIANT.)

There are also walking/running events happening in other BV offices. BV Germany are walking the River Isar, in Munich and BV Amsterdam ran around Vondel Park earlier in the week:

Overwhelmed by everyone’s generosity doesn’t even cover it. To the people walking, running, contributing – thank you. To everyone who is walking – we love you. To Chris for organising the Amsterdam run, to Inas for organising the Munich walk – thank you, genuinely. To Paul, who organised the UK walk – we adore you. We’re so grateful.

To everyone who donated and/or sponsored a mile – WOAH BUDDY. We didn’t expect to get every mile sponsored, so THANK YOU. Thank you to everyone who sponsored more than one mile (sorry we could only give you one!), we’re so grateful. So so so grateful. Genuinely, from the very bottom of our little hearts.

You guys are the best. Absolutely THE BEST! Expect a 15sec instagram story video shout out. Follow us on instagram (@teammikaere) to see the videos with your shout outs come up over of the weekend.

Here’s the other thing – as the BV team have fundraised over £5k, Sam has to do the walk – the full 78 miles – in costume. We (read: I) have been delightfully picking out ridiculous costumes. Gandalf? A giant lobster bug? A giant inflatable whoopie cushion? You’ll need to watch Sam’s first video to see what was picked.

We’re still collecting donations – the team hasn’t quite met their £7.8k (!!!!!) goal yet, so if you’re able – please donate. Anything – a pound, five, ten, twenty. It all helps. It all goes to research – in our case, to the team under Prof. Nick Greene at UCL, looking at Gene Therapy for NKH – which for us would be game changing. It would mean

It would mean a future with Kai. And a quality future – less medication, less deterioration, less pain.

On an even soppier note, we’re really excited for Sam. He’s done no training, and three days out doesn’t have enough socks or own a pair of trousers that aren’t jeans, but we have complete faith that he’ll cross that finish line, blisters or no.

The things you do for your family, hey? We’re proud of you, baby. See you on the other side!

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

Fundraise with us

Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.